Martin Browne (Tipperary, Sinn Fein)
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The case I want to address today concerns a young man, Stephen, whose lack of adequate home help support arrangements is something I raised in this House in December 2021. At the time, he was in receipt of one hour per week of home help and two hours per week from the local independent living centre. Since then, he has been left short.

Let me give some background to Stephen's case. This young man has muscular dystrophy. He lives in the same house as his parents with his own quarters where he can live as independently as possible. However, that is being made more difficult by the fact that, currently, the number of hours he is receiving is not adequate, and more so the hours he is receiving cannot be used properly because they are very much hands-off. Stephen receives one hour per week from the HSE home support and seven hours per week from the Tipperary Centre for Independent Living, TCIL. He had been approved for additional hours but despite the fact that all private agencies have been approached to provide additional support hours, none have capacity at present. The additional hours he has been approved for cannot be filled, which is one issue.

The second issue, and probably the most important, is how the hours Stephen is receiving are being used and what practical use they are to him. In light of his disability, he needs a specific type of care, especially in the mornings and at bedtime. In the morning, he needs to be turned and helped out of bed. He needs to have leg movements carried out and he needs to use cough assist. These all involve the presence of someone who can assist him with this. However, none of this is available to him even with the current hours of home support he gets each week. This is because his providers do not have the staff who are covered to do this. The consequence of this is that despite having home support workers coming in for seven hours a week, his parents, Donal and Nicola have to do this for him. They have to physically get him out of bed and prepare him for the day. They have to carry out the procedures that I mentioned.

This is not good enough for Stephen's independence because, as he said to me in an email, he is going on 29 years of age and has no support to allow him to be himself.

I understand that south Tipperary disability services continue to seek a provider that can use the cough assist, but Stephen continues to go without. His family have to fill that gap while arranging their activities around that schedule. Only yesterday, Stephen explained to me that the half hour during which his mother, Nicola, goes to school with his sister seems like the longest half hour of the day, as he is waiting and thinking something might happen whereby his mother has to rush, while he is also stressed out. In situations such as Stephen's, so many things have a potential consequence. For his family, preparations have to be made, if they can be made at all, in order for his parents to be out of the house for any length of time, especially in the mornings and at night when Stephen requires the most physical assistance and help. This can affect the family's ability to do other things, while also leaving Stephen feeling responsible for the demands he places on the family.

My purpose in raising this issue is to see whether anything can be done to address this specific situation. The family needs more hours, but they also need those hours to be attended by someone who has the ability and permission to be hands-on and to provide Stephen with the physical assistance he needs.

Roderic O'Gorman (Dublin West, Green Party)
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I thank Deputy Browne for his ongoing advocacy on behalf of Stephen and his family. As he knows, home support services are provided to both children and adults with a wide range of disabilities, from physical and sensory disabilities to intellectual disabilities and autism. The home support service for children with disabilities assists the child with various activities and supports parents. Currently, more than 3 million home support hours are delivered to almost 7,200 people annually.

I am advised by the HSE that Stephen is known to the disability team in south Tipperary. As the Deputy said, he currently has a total allocation of eight hours of support per week. Due to those staffing challenges we all know are there, which are very acute in some parts of the country, the HSE does not have sufficient home support staff in the area to provide the service Stephen needs in its entirety. Previously, an external private provider was involved in the provision of the individual’s care, which included some cough assist support. Following a change in its personnel, the private provider completed an evaluation of all staff members in the individual’s location to identify a suitable replacement match to provide care services, including the cough assist service. Unfortunately, the private provider subsequently advised the HSE that it was unable to provide suitable personnel to match the individual’s preferred specific staff arrangement.

I am advised by the HSE that in the interim, five additional personal assistance, PA, hours from another provider commenced on 1 December last year. I understand that is working well, although I absolutely take on board the Deputy's point that the cough assist, which is the service that is of particular importance and benefit to Stephen, cannot be provided by that PA. Whereas other things can be done, that particular service is not provided. I recognise that.

The HSE public health nurse for disabilities met with the individual’s mother and completed a home visit as recently as 15 January this year. The public health nurse outlined all the private agencies that were approached regarding the provision of additional support hours for that individual. As the Deputy said, none of those agencies are currently in a position to provide the specific service that Stephen needs. The individual currently receives one hour per week from HSE home support and seven hours per week from a second provider, which is funded by the HSE through a section 39 grant. South Tipperary disability services continue to work to source a provider that can use the cough assist for the additional service currently provided by the second provider to the individual.

We have not cracked this yet. We need to. It is very clear from the Deputy's use of Stephen's own words to describe the situation that we need to source somebody who can provide those additional vital services, especially in the morning so Stephen can start his day. I will again engage with the regional HSE following this debate, and will ask for a further update on its work to support this specific service for Stephen.

Martin Browne (Tipperary, Sinn Fein)
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I will make it clear that the family, including Stephen, Nicola and Donal, and I, want to praise the staff that are there. It is just that some of them are not trained to use particular equipment. This is not just being faced by Stephen and his family; there are similar situations throughout the country. There is no doubt that families such as this need the extra hours, but they need to be tailored to suit the patient and family. As I said, families such as Stephen's cannot plan anything ahead of time because if the staff are not there, Nicola and Donal have to be there in the morning and evening. They cannot plan a weekend away or anything like that. It is all about tailoring the services around the actual needs of the patient.

I take solace from what the Minister said about following it up because this has been dragging on since 2021, when I first raised it, for this family. It is not just about the family who lives near me. Throughout the country, there are families who are struggling with issues like this. I do not know whether it is due to recruitment or the type of recruitment that is going ahead. I again stress that the family really appreciates the staff who are coming in and the help Stephen and his family are getting, and do not have a bad word to say about it. It is the system that is wrong and needs to be changed. It is to be hoped that after raising it again with the Minister, and his commitment to follow it up, Stephen and his family will get some bit of solace and other families throughout the country will get the same.

Roderic O'Gorman (Dublin West, Green Party)
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I thank the Deputy. As he said, he has raised this matter a number of times in the Dáil, for which I thank him. I also thank him for his acknowledgement of the work that HSE staff and section 39 staff are doing with Stephen's family. It is important we do that.

As I stated, the HSE provides a range of assisted living services, including home support services, to support individuals to maximise their capacity to live full and independent lives. Home support services are provided either directly by the HSE or through a range of voluntary service providers. In the case of specialised disability services, the majority, approximately 80%, are delivered through non-statutory sector-specific providers. Resource allocation is determined by the needs of an individual, compliance with prioritisation criteria, and the level of resources available. As with every other service, there are real pressures on the provision of home support services. While the services, and the resources dedicated to them, are substantial, they are finite.

The Deputy referred to the staff pressures faced nationally in disabilities services. He is absolutely right. He is probably aware that the Minister of State, Deputy Rabbitte, and I have convened an interdepartmental workforce steering group. Its job is to focus on identifying and directing efforts to address the immediate, medium- and long-term solutions we can put in place to get more staffing. That is the fundamental challenge we have in disability services for adults and children. Right now, it is not a funding issue. It is the lack of availability of staff. The Minister of State and I are committed to that. The HSE undertook a very positive engagement campaign with graduates who came back to Ireland over Christmas in respect of recruitment in the area of young people's disabilities. Just under 500 people signed an expression of interest to talk more with the HSE. It is to be hoped that programmes such as that can deliver. I will write to the HSE specifically on Stephen's case and will liaise with the Deputy.

Catherine Connolly (Galway West, Independent)
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We are in an unusual position in that we have three Topical Issues remaining. I will not list the names. The Minister is present. In the interests of equity, I will adjourn for a few minutes to allow Members come to the Chamber.